Growing up as an Autistic non-speaker with high support needs, I have had enormous difficulties in doing the things most people take for granted. As a result of my huge challenges, including sensory processing and movement issues, I am habitually anxious.
For instance, when people talk to you, most non-Autistic kids would respond and do what is expected. However, because of my difficulties with deciphering language, especially under pressure, it can usually take me some time to process a question. Then, I need to search through my mind’s video library of past scenarios to look for the expected response and work out the appropriate behaviour via my uncooperative body which does not always obey my intentions.
With the need to take these alternative (but equally valid) routes to typical daily encounters, by the time I’ve worked out the course of action, people would have usually moved on to other things. For me, it is entirely human to feel a deep sense of inferiority with the constant setbacks in my ability to respond as expected in most situations. Therefore, regulating my anxiety and reimaging my sense of self have remained an integral part of dealing with my challenges.
I’m learning that people are all subject to biases, which means that even an awareness of differences can lead to stereotyping. So even though we are trying to do our best to be non-judgmental, we may implicitly engage in microaggressions or forms of discriminatory behaviour – especially towards those who fall outside normative standards and expectations. Then follows discrimination, where we apply prevalent standards and expectations of behaviour, and impose forms of “ism” – racism, sexism, and ableism. I’ve also become aware that these biases, conscious or unconscious, internalised during growing up, have become the foundation for low self-worth in outliers like myself.
With thoughts such as “I’m not good enough”, “I won’t make it”, “I can’t do this”, “I’ll fall through the cracks”, “I am a failure” automatically popping up on my mental screen when faced with difficult situations, it’s a matter of urgent need to rewrite my self-defeating scripts. Luckily, due to individualised intervention in early childhood to help me develop basic skills (including language and later, to connect with a method of supported communication using assistive technology), I am better able to understand my situation to reframe my narratives.
The strategies I have been using to change negative self-appraisal include the Neurodiversity approach which redefines autism as differences, not deficits.
Using the Neurodiversity framework, I would picture myself taking the leap to face my challenges with messages like, “I may do things differently, but I do it my way in what suits me best. I can do it even when it takes longer to do the work. I will persevere because I’ve got what it takes.”
The Neurodiversity toolkit also includes focusing on Autistic strengths, which we all have to some degree, and reframing our challenges in positive lights. For instance, as a visual thinker, I have to work harder at processing speech for meaning, but my visual skills have provided vivid videos of social situations which allow me to recapture and learn about the significance of events as well as the emotions and behaviour of the people involved. With this pathway, I can zoom, focus and extract things of relevance to enable me to understand myself and other people in more creative and unique ways.
Furthermore, I am beginning to see that we can rewrite our scripts by acknowledging that prevalent neurotypical social expectations and standards often lead to barriers to our inclusion.
For instance, most people have never come across someone who uses Augmentative and Alternative Communication (AAC). With more exposure to non-speakers utilising AAC, such as assisted typing to “talk” via a speech generating device, knowledge and acceptance of AAC will become more commonplace.
In Martha’s Vineyard in the United States, there was a high percentage of Deaf people in the 19th Century, and deafness was not considered a disability as both hearing and Deaf people learned and used sign language. Deaf people were fully included and participated on an equal basis in education, employment, and access to the community. Bearing this in mind, I realise that neurodiversity can contribute to the wellbeing of neurodivergent individuals as well as to the cultural richness of our communities.
General acceptance and understanding of non-speaking Autistic people will make a huge difference in contesting prevalent medicalised deficit understandings. It is these understandings that have framed autism as a disorder and a tragedy (particularly for those with high support needs), with self-stigmatisation as a result.
I am learning to develop more self-compassion. The use of the Neurodiversity approach has helped to reverse self-sabotage, to reconstruct positive self-concepts and refocus on my strengths for increased confidence and resilience to meet my challenges and navigate life in good ways.
I am an adult autistic nonspeaker, diagnosed at three. I have complex communication and high support needs with my many autistic challenges including hypersensitivities, high anxiety, processing and movement coordination issues translating to not being able to develop speech. At nine, I picked up an Augmentative and Alternative Communication method via partner assisted typing (PAT). With assiduous practice in PAT for engagement with the world, and the motivation to work in advocacy for people without speech, I have graduated from mainstream high school to study at university and engage in a number of advocacy organisations to work towards access, participation and inclusion for people with disability.
This journey has been long and arduous, but also highly rewarding with meeting many allies and friends along the way. The journey continues…